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"The social issues, like having money for heat, have a big impact on children's health. But, physicians can only do so much. My nurses can't do it all. The social worker we have on this floor can't do it all. We all feel like sometimes we're running on a treadmill and just barely staying above water. As part of the team, the Family Help Desk makes a difference. It's a powerful thing." |
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Boston Globe April 19, 2003 Sickle Cell Hope
SICKLE CELL anemia is an inherited disease that especially affects African-Americans. To increase awareness about the illness and about better ways to treat and live with it, a group has organized what is believed to be the city's first ever conference for patients and their families to meet with experts in the field. STRIVE, a mentoring program operated by the nonprofit Project HEALTH for teenagers with the disease, is holding today's free, all-day event, which begins at 9 a.m. at the Reggie Lewis Track and Athletic Center in Roxbury. It will include workshops on pain management, improving doctor-patient relationships, and college opportunities for sickle cell patients. Many children with the disease have to be hospitalized during pain crises and fall behind in school, but at the conference patients can meet young people who have gone on to higher education despite the illness. The day will also include gospel singing and a presentation by two doctors who teach health education using rap music. Five percent of all African-Americans carry the gene that causes sickle cell anemia, and 60,000 to 70,000 have the disease. The gene, which in evolutionary history has also had the positive effect of protecting against malaria, causes the doughnut-shaped red blood cells that carry oxygen in the blood to be both rigid and misshapen in a pointy way resembling a farmer's sickle. They do not move easily through blood vessels and often break up. Patients suffer frequent pain crises and are predisposed to strokes and other conditions. Some patients live to old age, but the average life expectancy is about 40. While many sickle cell doctors believe there would be more research money for the disease if it afflicted white Americans as severely as it does blacks, there has been progress in treating it. Just this month, Dr. Martin Steinberg of Boston Medical Center reported in the Journal of the American Medical Association on a nine-year study showing that an anticancer drug, hydroxyurea, can extend the lives of sickle cell patients. For years doctors have been treating patients with this drug to relieve pain and other symptoms, but the study established that patients also had a death rate of just 40 percent of those who did not use the drug. An editorial in the journal said the study should encourage doctors to use the drug more freely. Steinberg, who is director of the Boston University School of Medicine's Center of Excellence in Sickle Cell Disease, will lead a session at today's conference on current treatments. The timing of the conference with the publication of Steinberg's study could hardly have been better. As the prospects for sickle cell patients improve, it will be all the more important for families and their support groups to learn about educational and other opportunities for those who struggle with this disease.
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